Providing support and resources for patients with Pediatric Renovascular Hypertension and their families
The pRVH Patient-Centered Outcomes Research (PCOR) Collaborative connects patients and their families with the information, resources and support they need to understand the disease and to pursue the best possible treatments and outcomes.
Join Our Virtual Research Network
Through the VRN, you’ll get access to the Collaborative’s updates, research and educational resources, outreach, and support.
Providing support and resources for patients with Pediatric Renovascular Hypertension and their families
The pRVH Patient-Centered Outcomes Research (PCOR) Collaborative connects patients and their families with the information, resources and support they need to understand the disease and to pursue the best possible treatments and outcomes.
Join Our Virtual Research Network
Through the VRN, you’ll get access to the Collaborative’s updates, research and educational resources, outreach, and support.
Volunteers Needed for Research Study
We are currently recruiting volunteers who are willing to participate in a survey and/or virtual focus groups for a research project. If you are a patient or family member affected by Pediatric Renovascular Hypertension (pRVH), or a healthcare provider who takes care of those affected, you are eligible to participate.
The survey and focus groups will ask questions about your thoughts, feelings, and experiences with the diagnosis of pediatric renovascular hypertension. We hope the information learned will help us increase the amount of education available for patients, family members, and healthcare personnel, decrease delays in receiving a diagnosis, and improve the care received afterwards. Volunteers for the focus groups will receive $50 for their participation.
or email Justin Nalley, Project Manager at [email protected]
We Invite You to Join Us for Our Third Pediatric Renovascular Hypertension Symposium
November 2-4, 2024 | Durham, NC
Building upon our Symposiums that took place in 2019 and 2022, we will once again bring together distinguished speakers from leading institutions as well as patients and their families in Durham, NC — home of Duke University. Together we will highlight best practices in patient care, recent discovery, and ongoing research via the collaborative, interactive seminars, and group discussions. This 3-day symposium will dedicate individual days to scientific presentations, Patient-Centered Outcomes Research, and Patient and Family networking. We encourage you to join us for this collaborative and informative symposium.
If you have any questions, please contact: Justin Nalley at [email protected].
Register Now
Second International Symposium on
Pediatric Renovascular Hypertension
September 18-21, 2022
Ann Arbor, MI
Patient Stories
Families across the globe are navigating the complex choices posed by pVRH.
Our Vision
We help patients with pediatric renovascular hypertension get the best care possible. Our diverse and comprehensive team of researchers, clinicians and families will improve the quality of life and treatment outcomes for pRVH patients, and identify lessons possibly applicable to other rare disorders affecting children.
Why the Need for the pRVH PCOR Collaborative?
The decision-making process in this complex landscape is lacking the voice of the patient and family. As such practitioners don’t know which outcomes matter most to pRVH patients and their parents/caregivers.
Through our infrastructure and partnerships, we facilitate PCOR training, support, and networking among patients with pRVH and their families, and critical stakeholders.
